Forward-ME

Minutes of the meeting held on Wednesday 29 June 2011 2.00 PM, House of Lords
1. Present: Margaret Mar – Chairman; Christine Harrison – BRAME; Bill Kent –ReMEmber; Janice Kent – ReMEmber; Charles Shepherd – MEA; Sue Waddle – MERUK; Tristana Rodriguez and Sir Peter Spencer – Action for M.E. Sir Peter Spencer – Action for M.E.
Apologies: Tanya Harrison – BRAME, Jane Colby – TYMES Trust, Mary-Jane Willows – AYME and Arlene Wilkie – Neurological Alliance
2. Welcome from the Chairman – The Chairman welcomed the Group to the meeting.
The Group formally congratulated the Chairman on receiving 2011 Outstanding Achievement title in the eighth annual Dods Charity Champion Awards.
3. Speaker: Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Sunderland University.
Professor Hooper began by headlining three “Ts” of criticism of the PACE trial which were:
1. Travesty of Science, 2. Tragedy for Patients and Carers and 3. Tantamount to Fraud
Other points Professor Hooper made included:
• The FINE Trial data found clinically modest but statistically significant effect on fatigue [but no effect on physical functioning when re-analysed using the Likert scale] and found a clinically modest but statistically significant effect on fatigue (but no effect on physical functioning.)
• Three different normative databases were used for the PACE trial, leading the question, what is normal?
• An independent statistical analysis of all the raw data generated in the PACE trial was needed.
• The adaptive pacing used in the PACE trial was not the type of pacing that was commonly used and found helpful by the M.E. community.
The slides from Professor Hooper’s presentation are available
4. Questions – Sir Peter Spencer cautioned against making allegations of fraud unless there was explicit evidence that data had been tampered with. His understanding was that the statistical work following the trial was done wholly independently. Nevertheless if there were deep rooted concerns about whether it had been analysed properly then there could be a case for asking for the raw data to be released in a form that would enable the data analysis to be done again by another independent source of statistical expertise.
Dr Charles Shepherd said that the MEA has raised similar points to Professor Hooper regarding the PACE trial.
The Chairman told the Group that she has tabled a request for a short debate on PACE and its effect on patients.
Dr Charles Shepherd commented that the treatments which Professor Malcolm Hooper detailed were only supported by the opinion of some doctors. If the PACE trial was to be criticised it was important to look at the evidence base behind other treatments too.
5. Minutes of meeting held on 1 March 2011 – The minutes were accepted by the Group as a true record.
6. DWP matters
a. DLA – PIP letter from Dr Bolton
The Group agreed that it was important to take the opportunity to work with the DWP when possible to highlight ways to improve the welfare system for people with M.E. Individual charities would forward details of any volunteers who were willing to trial the PIP assessment process to the DWP.
b. ESA fluctuating conditions
Dr Charles Shepherd told the Group that Professor Malcolm Harrington has asked the Group on fluctuating conditions to continue working together to improve understanding within the DWP.
The Chairman said that she would ask Lord Freud whether a meeting could be arranged between herself, Lord Freud and Dr Shepherd.
Dr Shepherd told the Group that he has been invited to attend the next meeting of the Scrutiny Group
7. All Party Parliamentary Group – Sir Peter Spencer told the Group that a presentation by Dr Jane Colby and Mary-Jane Willows on Child Protection was well received by the APPG. There was general recognition that it was important for Tim Loughton MP, Children’s Minister, to attend a future meeting. The AGM was successful and 5 officers had been appointed for the Group. Annette Brooke MP has been elected to be the Chair and is working towards making the Group more inclusive. MERUK will be invited to be represented at future meetings.
8. Research – The Chairman told the Group that she had met with the Rt. Hon Stephen Dorrell MP, Chair of the Health Select Committee and she hoped that he would take an interest in M.E. treatment and research.
Dr Charles Shepherd said that:
• the Biobank should be launched around the end of July.
• No feedback has been received from the Medical Research Council (MRC) about the quality of the applications which have been received for funding for research relevant to CFS/M.E.
• A paper on the use of Rituximab in treating M.E. was to be published shortly.
9. NICE – Charles Shepherd told the Group that NICE would not reconsider the guidelines on M.E. until 2013. Christine Harrison reiterated her strong belief that there should be a call for an urgent review of the diagnosis, management and the severely affected sections of the NICE Guidelines, particularly in light of the Peter White letter to the Lancet regarding the selection criteria for patients for the PACE Trial which excluded people with ME or CFS, which in turn called into question the validity of the evidence used by NICE. Professor Hooper’s presentation supported this.
10. Any other business – The Chairman said that she had invited the 25% Group to return to Forward M.E. as she believed they were an important part of the M.E community. The Group agreed.

The Chairman called the meeting to a close.